Hospice Update

Hello to all our friends and family.   It’s been quite awhile since Brian wrote his “Palliative Care” entry.  There have been several times since then that he’s started to update you on Hospice care, but fatigue keeps getting in the way.   So, I’m stepping in to let you know that, while he is steadily declining, he is also hanging tough.   He sleeps a lot, and is on lots of meds.   There are many uncomfortable changes that go with liver failure, and the cancer spread to his bones does cause pain.  But he still gets himself up and around, and we have several comfortable ‘sleeping stations’ throughout the house.   We've had a steady stream of visitors, which breaks up the days.  So far, the Hospice folks have been quite supportive and responsive to Brian’s needs.  They have paid for two individual radiation doses which greatly eased the bone pain.  He is scheduled to have a third shortly.

Thanks to you all for your blog comments, texts, emails, phone calls, letters, food, gifts  and visits!  It’s really helping us through a tough time.   I must give a special shout out to the families who helped fix our hurricane-damaged fence –it was a fun day, and just in time to prevent the deer from eating the Spring growth.  Thank you!

I must also say that life is moving along as usual.  Our kids are both successfully forging their way through the school year.  David recently went to his junior prom and had a terrific time.  Vicki just celebrated her 20^th birthday!   Next week, I will help host a senior citizen prom using the junior prom’s theme and decorations.  It just shows you’re never too old to be crowned a prom royal. 

Feel free to contact us any time.   If we can’t answer right away we won’t; so please don’t worry about imposing but don’t be upset by a lack of response.

 
Sincerely,
Robbie

 

* ADDENDUM:  I wrote the above entry several days ago.  Since then, it’s been a very challenging time.  Bri was up with hiccups for a couple of nights.  In that time he became exhausted, tremendously uncomfortable, and had very little to eat or drink.  Fortunately, the muscle relaxer Hospice provided seems to have made the difference and he is comfortable now, but it sure took a toll. The next few days will determine whether he rallies or not.  He is scheduled to have radiation at the base of his skull, a sensitive area that influences many important body functions – swallowing, the phrenic nerve (which if irritated can cause hiccups), clear vision, and much more I don’t know about.   If he isn’t strong enough we won’t do the radiation, which involves several visits to the hospital and has its own side effects.   The biggest problem with the bone cancer though, has been pain.  The radiation will help alleviate that better than the pain meds can, and may relieve other problems such as the hiccups and difficulty swallowing.  But the radiation won’t help the fatigue and other symptoms that go along with liver failure.  Either way, the path ahead is more tenuous than it seemed a week ago.  

I am glad I was able to write the first blog entry before the last few days.  It shows that even at this point things can be positive.    I will post another update soon.   Maybe Bri or the kids will help me craft an ode to Hospice, or we’ll share the nicknames to his many new drugs.

Please still feel free to stay in touch.  It's often a welcome distraction. 

RB

Paliative Care

I’m back with an update – but I must tell you that there isn’t a whole lot of good news in this post.  I had my radiation procedure on January 11^th, which went without incident.  However, the exhaustion I expected afterwards never lifted.  January and February seemed to just slip by as I logged about 16 hours a day sleeping, or at least attempting to. 

 Last week, I had a follow up PET scan to determine the effectiveness of the radiation and it was a bust.  My CEA is at an all-time high, my bilirubin level is well into jaundice range at 3.5 and the cancer has continued to spread.  I knew going in that the radiation procedure only works in two out of three cases; unfortunately I am in the other third.  But, it was worth a shot.

Robbie and I met with Dr. S on Tuesday to go over the results and see if there is anything else to be done.  There isn’t.  The “Plan B” drug – Stirvaga – that we talked about in December cannot be given to patients with my bilirubin level.  In addition, Dr. S has been trying it with others and evidently, it is quite a bit harsher than originally predicted.  In any event, the cupboard is bare and there are no treatments left to arrest my cancer.  From this point on, we will just work on issues of comfort and pain relief. 

The first item for pain relief will be some radiation. I have had a lot of pain in my hip this past month or two, which I thought was tendonitis from spending so much time in bed.  But, it turns out that the cancer had spread to my bones.  Some local, external radiation should help alleviate the pain and attacking the cancer there can also lower the risk that I break my hip, which I am now more likely to do.  Robbie and I will also meet with MSK’s hospice people to put together a management plan to help as this gets worse.

As for timing, Dr. S (as always) will not make a prediction since he cannot make one accurately.  But he did agree that I have “weeks or months” left.  He does not expect me to decline immediately – in fact we made a follow up appointment in six weeks which he said he expects I should be able to keep.  However, at some point soon, my liver will fail or some other bad event will occur – like an infection – and I won’t last long after that. Until then, I plan to do my best to stay as active as possible and enjoy life as much as possible.

I would like to say thank you to all of you who have been so supportive over these past 4 and ½ years.  It is a tremendous benefit to me and to my family to be able to stay connected and live as normally as possible.  Your kindness, humor and companionship have made a big difference and I can’t thank you enough.

New Year Update

Happy New Year to all y’all…I hope you had a great holiday season and are getting off to a good start for 2013! I thought I’d post an update before I go back in for Part II of my radiation procedure.

The first procedure went reasonably well. It was a long day at the hospital but no major complications. The first few days after were a bit rocky –including two trips to the ER – but in the end, everything settled down and I have been feeling better every day since. Tuesday, I went for a PET scan and some blood work to make sure I’m in good shape for the procedure tomorrow and to set a baseline for my post-procedure monitoring. When radiation is used in my case, the tumors won’t shrink but rather they will die, or partially die, in place. Therefore, a PET scan is done before and after the procedure to look at the amount of cancer “activity” in the tumors and hence, determine if the procedure worked.

My blood work checked out okay, so I will go back to the hospital tomorrow to have the radioactive microspheres injected into my liver. I am told that this process will be shorter than the last one, which involved mapping the arteries and sealing off the branches that go to places outside the liver. I should come home tomorrow night and then I’ll need to lay low for a week or two. The doctor says that the most common side effect from the radiation is fatigue. He is going to try to do both lobes of my liver in one session which, if he does, will eliminate the need to have a third round. That’s good news to me since I didn’t really enjoy the first one all that much. The downside is that the reason he wants to do both sides at once is that I have a lot of cancer in there and he’s concerned about getting to it quickly enough that I don’t jaundice (and thus would no longer qualify). In any event, I am hopeful that things will go as smoothly as possible and we’ll see some results by the end of the month. I just need to suck it up for one more rough patch.

In the meantime, it has been an enjoyable holiday here. Vicki is home and it sure is fun to have her around. David just celebrated his 17th birthday and passed his driver’s test – so he is now happy to bop on out to the car and go see his bros! Here’s a picture of him just after he passed the test!

Wishing you the best of the New Year! BB